I’ve done some risky things out of desperation for migraine relief, but the latest — five months of malnutrition — might be the dumbest, most short-sighted, most harmful of them all. Malnutrition was the unintentional result of an elimination diet that left me feeling trapped between the choice of debilitating migraines and functioning at 50% physical and mental capacity, which felt like heaven compared to what had become my norm.

Chronological order isn’t the most interesting way to tell a story, but it’s the only way to explain how a diet to identify migraine triggers spiraled into malnutrition.

There’s this weird aspect to my headaches and migraines that no doctor has been able to figure out: I feel worse every time I eat. Sometimes I get a migraine, other times I just feel headachy and fatigued. Because I always have head pain and have a migraine nearly every day, it’s hard to pinpoint specific foods as triggers.

For a year, I followed a standard migraine elimination diet and also avoided tannins. The pain and fatigue upon eating persisted and I was unable to find any definitive triggers. Then I learned that some foods contain histamine or can trigger a histamine release in the body. Since cyproheptadine, an antihistamine, is the most effective preventive for me, I began exploring a low-histamine diet as a treatment.

When that diet still didn’t change the migraines and headache, I tried a diet called Failsafe 1, which is low in amines (like tyramine, which is part of standard migraine elimination diets, and histamine), low in salicylates (a naturally occurring food chemical that some people have trouble with), and free of additives, flavor enhancers, and artificial colors and flavors. Failsafe is an extremely limited diet but is nutritionally sound.

Even on the Failsafe diet, I seemed to react to the allowed foods. I began whittling away at the diet until I was eating nothing but fresh chicken breasts cooked in safflower oil, unenriched white rice, and gluten-free oats. My head pain was better than it had been in years. I felt almost normal, which, for me, meant that I operated at about 50% many days. After more than a decade of debilitating chronic migraine, feeling so good was like an addictive drug.

The plan was to get stabilized, to establish my head pain and migraine frequency baseline on those few foods, then slowly reintroduce foods to see what I reacted to. Every food I tested seemed to provoke a reaction. I could never tell if the issue was a particular food, the act of eating, weather fluctuations, over-exerting during exercise, overheating, disturbed sleep, or some other untraceable migraine trigger. After each flare-up, I’d go back to the basic diet to get back to my baseline. This led to five months of eating almost exclusively chicken, white rice, and oats.

It led to malnutrition. Labs on eight vials of blood show that my body is responding as if I’m starving. Although I’m getting enough calories, they are low in nutrition. My blood work, which has been unfailingly perfect for my adult life except for slightly elevated cholesterol, shows elevated liver enzymes and thyroid hormones, low blood sugar, extremely high cholesterol, low folic acid, and a variety of other alarmingly “off” numbers.

I didn’t mean to eat this way for so long. I knew all along it was unsustainable, but I didn’t want to go back to debilitating migraines, especially when I could function so much better by eating this way. After a few months, I no longer felt as good as I did in the beginning. The migraines weren’t as severe as they were prior to malnutrition, but they still came almost daily. My fatigue and brain fog were even worse than when I started. I was irritable and moody and racked with guilt over what I’m doing to my body.

I wrote the previous paragraph in the past tense, but it’s all still true as I’m in a weird limbo state where I’m slowly reintroducing foods with the help of two health care professionals, a dietician and naturopath. I want to reintroduce foods systematically so I can test to see if any of them are triggers, but I continue to experience the same paralyzing frustration of not knowing if a food triggered the migraine or if the migraine would have happened anyway. I add a food and think it will be OK, then I’ll get a migraine the next day and am back to questioning.

I’ve shared this story not as an encouragement for you to try malnutrition — please don’t! — but to illustrate both what desperation for migraine relief can drive a person to and also the nebulous nature of migraine triggers. Handouts from doctors and online articles make it sound so straightforward: avoid X, Y and Z foods and you will have fewer migraine attacks. That works for some people, but not for many others.

Despite years of encouraging migraineurs to try to find food triggers by following a responsible diet, but to not beat themselves up if they don’t find any, I didn’t follow my own advice. Not only have I harmed my body by starving it, I wound up fearful of food from an experiment gone terribly awry. If you decide to try an elimination diet, please proceed carefully. If you find yourself frustrated and increasing your dietary restrictions, contact a dietician for guidance. Malnourishment and a fear of food are too high of a price to pay for migraine management.

About Kerrie Smyres

Now in her late 30s, Kerrie has had chronic migraine since she was 11.
She's been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.